The Zac Pearson Foundation was established by parents Todd and Alisa, whose 22-month-old son Zac passed away unexpectedly in his sleep in 2009. To honour Zac and help other parents avoid going through the same tragic experience, Todd and Alisa set up the Zac Pearson Legacy, which funds research into preventing ‘sudden unexpected deaths in children’ (SUDC).

At present, the Legacy is supporting a research project being conducted by the Harry Perkins Institute of Medical Research in Perth that will mean prospective parents can undergo testing for up to 450 genes which may cause their child to be born with a rare disease or disability. Sadly, these children have a 50% or higher likelihood of dying within their first year of life, so this testing enables at-risk couples to properly consider how they should realise their plans for parenthood. At present the testing is being offered to approximately 250 couples in the Busselton region of Western Australia as part of a pilot study. The ultimate goal, say Todd and Alisa, is to “pave the way for pre-carrier screening becoming available to every couple hoping to start a family”.

Todd and Alisa describe the Zac Pearson Legacy as “a way to do something positive and meaningful for our community, despite our pain and sense of loss”. It is also something for Zac’s siblings to get involved in as they grow up, keeping alive the memory and connection with their brother. “It makes us feel proud that we can contribute in some way to making a difference,” say the two parents. “The people we have met along the way have been inspirational to us and we feel honoured to be able to connect with such passionate people in the medical research field. We have learnt so much through philanthropy and we highly value what this has bought to our lives.”